Working With Parents

Parents as partners – working with parents in trials.

Is consumer and community involvement about participating in research?

Consumer and community involvement is about working with researchers and other stakeholders to make decisions about research priorities, policy and practice. It is not about participating in a research project (Staley 2009)

Encouraging parents to provide input into your research idea at a very early stage can be a valuable and rewarding aspect of modern trial design. Ideally you will be able to consult with local parents to help establish what they want to know from research and what is important to them. Concepts to discuss with parents include:

a. Priority setting for research topics and questions

A clinician’s perspective or ideas may not reflect what parents consider to be important.

Rheumatoid arthritis (RA) research changed direction when consumers became involved in the process of setting core outcome measures, shifting from 6-minute walk to exploration of more subjective experiences of RA such as sense of well-being, fatigue, and disturbed sleep (Kirwan 2003)

Recognition of the different perspectives of consumers and clinicians is a critical aspect of the research priority setting exercises undertaken by the James Lind Alliance in the United Kingdom, where the involvement of all stakeholders is considered critical to long-term success (James Lind Alliance).

b. Developing research programs

Once you have an idea of what is important to parents you can use that information when developing your team’s research priorities.

c. Project specific involvement

Parents and clinicians can work together on the design of individual trials from concept development through to data collection and endpoint delivery. This will be particularly useful in studies implementing follow up.

Some points to consider are:

i. Relevant research questions and designs

• Shaping questions
• Choosing outcomes (Williamson 2012)
  

ii. Recruitment planning

• Strategies
• Input into the content of patient information sheets (1)

iii. Input into analysis and interpretation

• What does it all mean?
• Dissemination and follow-up
• Targeting messages
• Writing for lay audiences

d. Culturally safe research

Cultural safety begins with awareness of your own cultural expectations and how these can be different others. Checking your assumptions about a different cultural group is a useful start point for effective communication.

Research participants need to feel included, respected, and heard if they are to trust researchers and be willing to share information with them (Wilson 2009, Cameron 2010)

PSANZ Consumer Advisory Panel

As the views and experiences of mothers and their families are important to its work, PSANZ has established a Consumer Advisory Panel (CAP) to provide advice to PSANZ from a consumer perspective. 

Click here to find out more.

Resources introducing consumer involvement in rese

The Resource Library of the Health Issues Centre

The Resource Library of the Health Issues Centre has a wealth of resources on involving consumers in research. Type “research involvement” in their search engine.

Some of the things you will find include:

• Ways to measure patient experience
• The WA Health Consumer Care and Community Engagement Framework

The University of Western Australia

The University of Western Australia has a website dedicated to involving people in research, which includes a page for researchers and how they can involve consumers and fact sheets or simple tools to support the implementation of consumer involvement.

 

The Consumers Health Forum

The Consumers Health Forum offers a number of resources for involving consumers in research including:

• A resource known as ‘The Green Book’ or Consumer and Community Participation in Health and Medical Research, A practical guide for health and medical research organisations by McKenzie & Hanley which includes a practical guide to establishing consumer involvement at an organisational level as well as giving guidance on involving people in individual research projects.
• The Resource Pack for Consumer and Community Participation in Health and Medical Research produced by National Health and Medical Research Council [NHMRC] and Consumers Health Forum of Australia [CHF], which provides information for consumers wanting to get involved in research and for researchers wanting to know the information consumers may find useful when participating in health and medical research.

INVOLVE

INVOLVE is part of the UK National Institute for Health Research, to support active public involvement in the National Health Service, public health and social care research.

On the website you can find a “jargon buster” which can help you express research terms more clearly for lay audiences.

Involving People in Research

Involving People in Research has a number of useful fact sheets, including a fact sheet on involving consumers and community members in research and a fact sheet on identifying appropriate consumer and community members.

Guidelines for researchers on health research involving Māori 

Guidelines for researchers on health research involving Māori (New Zealand).